Review: Siblings of children with developmental disabilities face a wide range of challenges

Siblings of children with developmental disabilities such as autism face a number of challenges and can benefit from interventions targeted toward them, according to a review article from South Korea.

Hooyun Lee and colleagues analyzed the findings of nine studies involving a total of 92 siblings. They conclude, “The results of this review are consistent with previous research showing that unpredictable, challenging, and embarrassing behaviors or communication and interaction difficulties of siblings with developmental disabilities can induce anxiety and fear in typically developing siblings.” This is particularly true, they say, for siblings who have limited or inaccurate knowledge about the disability.

“Conversely,” they say, “an increased knowledge of their sibling’s condition is associated with reduced anxiety and improved perception and adaptation while acquiring sufficient knowledge is effective in supporting siblings with developmental disabilities.” Among the challenges faced by siblings, the researchers say, are social stigma, disruptions in daily life, complex and often negative feelings about the disabled sibling and about themselves in relation to the sibling, increased caregiving responsibilities, the need to be an advocate for the disabled sibling, and hesitance about discussing the disabled sibling with others. In addition, they say, typically developing siblings may have ambivalent feelings about their parents—for instance, feeling that they need to hide their emotions to spare their parents an additional burden or being upset that the disabled sibling gets more attention. Moreover, non-disabled siblings may worry a great deal about their role in caring for their sibling in the future.

On the positive side, the researchers say, “This study shows that as typically developing siblings begin to recognize their family’s differentiation and accept their siblings with developmental disabilities as distinct individuals, they begin to redefine their experiences, no longer seeing them as abnormal, but as part of their personal and social contexts. This accepting of normalcy aligns with earlier findings, highlighting that typically developing siblings often view their siblings with developmental disabilities as central to their lives and integral to their own identity.”

The researchers conclude, “Our findings emphasize the need for targeted interventions to support the psychological well-being of typically developing siblings of individuals with developmental disabilities.” They suggest giving siblings accurate, age-appropriate information about the disability, helping them develop positive coping mechanisms, acknowledging their contributions to caring for the disabled sibling, including them in family counseling sessions when appropriate, and providing strong social supports for both the disabled and non-disabled sibling.

From: https://arrionline.org/review-siblings-of-children-with-developmental-disabilities-face-a-wide-range-of-challenges/

Citations

“Experiences of siblings of individuals with developmental disabilities: A meta-synthesis of qualitative studies,” Hooyun Lee, Kyua Kim, Hyelim Kim, and Eun Kyoung Choi, Disability and Health Journal, December 15, 2024 (free online). Address: Hooyun Lee, College of Nursing and Brain Korea 21 FOUR Project, Yonsei University, Seoul, South Korea, solagratia417@gmail.com.